Sally’s* young son Hamish* is not quite a child in a million – he’s more like one in four million.

Hamish has a rare chromosome disorder, 49,XXXXY Syndrome.“He‘s the only boy in New Zealand with it that we’ve found.”

The syndrome causes intellectual disabilities as well as feeding difficulties that required him to be tube fed for over a year.

“He seemed to be a baby for so long.”

Even now feeding is challenging and his balance and attention span have also been affected.

The initial diagnosis caused Sally to become severely depressed.

“The world did crumble and I isolated myself. I needed to deal with the diagnosis on our own before we shared it with friends.”

With help from Maternal Mental Health Services Sally recovered and she believes access to counselling would be valuable for all parents of a disabled child.

However daily life continues to be challenging and Sally and her husband now try to keep routines as simple as possible.

Photo: 123rf

“He’s not very good at transitioning from one place to another. It can take 20 minutes to get out of a building and into a car. Life is just slower with him.”

Clinical psychologist Catherine Gallagher said parents might fantasise about how their child would be during a pregnancy but the reality was always a bit tougher.

She said parents of a disabled child might need to grieve for the path they expected to take but it was important that they viewed their child realistically.

“To accurately look at who you have in front of you, means that you are then able to see them for what they are and not focus on what they’re not. This is really important for a child’s sense of self.”

Catherine Gallagher Photo: Supplied

Ms Gallagher had seen many children with huge disabilities who enjoyed healthy self-esteem, “because their parents have found a way to get their heads around ‘Who have we got in front of us and how can we best facilitate this child having a good life ?’”

Likewise she had seen clients without disabilities who were "acing the world” but had “self-esteem the size of a gnat” “because they keep expecting more and they feel that who they are in the world is contingent on how well they do.”

Understanding and accepting a child’s particular needs allowed parents to cater for them more effectively.

When Jenna* and her family go out to a cafe everyone knows it's for ‘a really good time’ but possibly ‘not a long time’.

Outings are often curtailed when her daughter Emily* becomes overwhelmed by the environment.

"Because we've got two older kids, we knew our daughter was developmentally delayed quite early on and we sought help."

Then just before her 4th birthday, Emily was diagnosed as autistic.

It hit Jenna harder that she had expected it to.

"I think I was ready for the diagnosis to say, 'Yes, she has autism', but the reality of that still was very, very hard because she’s my baby and she’s got some challenges."

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These manifest as both learning and sensory difficulties and it means that Emily can become excitable and argumentative and unable to cope with noisy crowds.

"That’s when we know potentially that we need to go. Or it means that one parent needs to be with her to take her to a quieter environment whereas the other one is with the other two children."

Public outings can bring another challenge in the form of other people’s reactions.

“We deal with meltdowns and sensory overload on a regular basis and ..my daughter, she just looks like potentially she’s being naughty and I know very differently that she’s not coping with her environment.”

Jenna says in those situations she’s learnt not to look around her at how other people might be taking it.

“Actually it’s not their business but I do believe obviously there will be some judgement out there.”

Her family has also learnt a lot about how Emily shows affection, choosing to walk around their legs rather than having a cuddle.

“She doesn’t like it when she’s not ready to receive it...When she’s in a really good regulated space we have the beautiful cuddles. We have the kisses. Sometimes we just have to wait and that’s OK.”

Catherine Gallagher said once children’s needs were understood and adjusted to they could still achieve many things.

“If we .. look to different goal posts as a measure of success, then parenting a child with a disability can also be highly rewarding, in ways that we never possibly imagined.”

Jenna tried to focus on Emily’s progress.

“When she achieves something that she has tried so hard to do and I know is really hard for her, it’s just the most awesome feeling.”

Photo: 123rf

But the future might bring bigger challenges.

For Sally, as an older parent, that means considering who will look after her only child when she is gone.

“No one wants to think of their son living in a group home, not being cared for properly, not having someone looking after them and making sure they’re not being abused.”

“When speech and intellectual disability is an issue, who’s going to be their voice when you’re not there.”

Jenna agreed the “big picture can be overwhelming” but said focusing on her daughter’s small achievements and the shared family times were what got her through.

"It is hard. I won't lie. It’s challenging and you discover patience you never knew you’d need but you’ve got to look at the little things, not the big milestones.”

“All I want for her is to have an inclusive education and a happy life.”

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Parenting Ideas:

- Accept the child you have. “For a child to have a healthy sense of self, they need to be seen accurately in terms of strengths and weaknesses and accepted,” Ms Gallagher said.

- Adjust your expectations so you can enjoy what your child is able to achieve.

- Allow others to help. “People often want to help but don’t quite know how to and so asking for what you need can help both you and them.”

- Accept that this is a long term commitment and consider establishing some regular respite care. “Parents will keep on keeping on, thinking ‘We’ll be right, we’ll be right.’ And then it all hits the fan and then they might ask for help.”

Ms Gallagher says this is unrealistic and can lead to the parents giving their children the wrong messages because they’ve ‘just had enough’.

- Allow yourself to take a break, whilst your child has special time with a grandparent or carer and it will enable you to keep parenting in a sustainable way